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‘Medical gaslighting’ harming long-COVID patients

“It’s not uncommon for (long-COVID) patients who are being gaslit to wonder whether they are crazy – they’ve never had anybody acknowledge that their symptoms are real,” says Ric Arseneau, a Coquitlam-based internal medicine physician and clinical professor at the University of British Columbia.

Arseneau says gaslighting – when someone in power manipulates others into doubting their own judgment or sanity – has become an unfortunate trend among doctors treating patients with long COVID, defined as a range of symptoms that lasts months or years after the initial illness. He is calling for more awareness among medical professionals about how “medical gaslighting” harms patients.

One potential harm, Arseneau says, is that under-recognition of long COVID can lead to improper advice on treatment. “Often, patients will get advice from their physicians or their physiotherapists to push through (their symptoms) and, in doing so, make symptoms worse,” he says. “They may actually lock the symptoms in.”

Daisy Fung agrees that it’s a myth that treating long COVID requires patients to “get up, exercise and not be lazy.” The Edmonton family physician says she’s experienced this not only as a doctor but as a patient, too.

Fung says she contracted COVID-19 in March 2020 and has suffered from fatigue ever since. Fung says she gave up playing hockey recreationally in favour of curling, which she found less intense. However, she says, even a game of curling can leave her recovering for three or four days.

The need has never been greater for health-care workers to understand long COVID. With only about 28 per cent of COVID-19 patients able to work full time after 12 weeks, long COVID’s constellation of debilitating symptoms has become a difficult – and economically important – puzzle to solve, says Jane McKay, medical lead of B.C.’s Post-COVID-19 Interdisciplinary Clinical Care Network.

While the average healthy person has 10 to 12 hours a day available to accomplish tasks, Arseneau says a third of long-COVID sufferers have fewer than two usable hours each day. “I think there’s a huge amount of disability,” he says.

Long-COVID patients often are being misdiagnosed with a psychiatric condition, says Arseneau. He notices two patterns: in one, clinicians think symptoms are all due to depression or anxiety; in the second, they outright dismiss patients’ complaints, telling them to “get over it.”

Despite being a physician herself, Fung says that even after she was diagnosed with long COVID, a psychiatrist reached out to tell her that her problems were “all in my head.” A second physician questioned her ability to continue practicing medicine.

Says Arseneau: “What tends to happen with these patients is that they get into a frustrating situation where they don’t feel heard or acknowledged.”

He says this happens because many physicians don’t recognize the limitations of diagnostic tests. “They have the mistaken impression that our technology is good enough to pick up everything,” he says.

Arseneau points out that medicine has numerous examples of diseases that were initially mistaken for psychiatric illness. “For instance, multiple sclerosis was considered a psychological condition until the MRI was invented,” he says.

The proper diagnosis and classification of post-COVID-19 symptoms has challenged physicians since it was first described in 2020. Vancouver respirologist Chris Carlsten says long COVID is “one of the least specific syndromes – there’s no way to diagnose it consistently and confidently.”

A November paper in The Lancet said that because of this uncertainty, people are “often over-investigated and overtreated.”

According to Arseneau, those with prolonged symptoms after COVID-19 infection are treated as three distinct groups: those with evidence of tissue damage; those with physical symptoms but no tissue damage; and those with mainly psychiatric symptoms.

“The next day I feel like I’ve participated in a marathon.”

When talking about “long COVID,” most are referring to the second group, he says.

Arseneau breaks down the symptoms of long-COVID into five categories: fatigue, pain, sleep disturbance, “brain fog” and the “unexplained” – the last a catch-all category that includes dozens of symptoms that are not well understood.

In terms of fatigue, Arseneau says one common pattern is “post-exertional malaise” (PEM), in which patients push for too much activity too soon, leading to amplified symptoms 24-to-48 hours later. Fung says PEM causes her to feel tired and short of breath – and then the next day, “I feel like I’ve participated in a marathon.”

Jill Calder, a Physical Medicine and Rehabilitation specialist from Kamloops, B.C., says treating PEM requires an approach to exercise that is continuously adjusted to how someone is feeling.

“ ‘No pain, no gain’ is how we’ve always rehabbed people. With this one, you have to find out what your rebound symptoms are, then gradually add more exercise as you prove your system can tolerate it,” she says.

McKay says “brain fog” involves cloudy thinking, short-term memory impairment and the inability to find words. Fung describes her own experience: “It’s like being on your 36th hour on call. It’s more than just (mental) fatigue; it’s harder to process. Attention, concentration, retention – things take a lot longer.”

In the “unexplained” category, one unusual symptom pattern is “postural orthostatic tachycardia syndrome (POTS),” which Calder describes as an abnormally high heart rate triggered by standing upright. She says this can make someone dizzy with chest pain or shortness of breath and is sometimes even mistaken for anxiety. Treatments can include medication but most often involve keeping hydrated and ensuring enough salt intake, she says.

Despite all the unanswered questions with long COVID and physicians’ persistent beliefs that long COVID is not real, Fung is optimistic. “It’s similar to stuff we’ve kind of ignored for the last decade with (other) post-viral illness … It’s opened up my eyes to this patient group that we’ve ignored,” she says.

Arseneau has similar optimism, citing the $1.15 billion contributed by the United States Congress to the National Institutes of Health towards long-COVID research. “We’re going to have a lot of good stuff come down the pipeline. Already, there’s a large number of researchers who’ve been pulled into the vacuum with the money,” he says.

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7 Comments
  • Carol Anne leith says:

    I suffer from all the symptoms mentioned in this article and in my research I have found nothing that has given me relief from pain, fatigue or head fog. None of my specialists seem to know what to do and my family doctor still prescribed pain medication! I think it’s past time and more research is urgent for effects of the decease and the reactions to the MRNA vaccination.

  • Kim kohout says:

    So true…i thought it was very interesting the hx of ms. Not acknowleged until mri available to dx the lesions.

  • James Dickinson says:

    Long COVID is clearly a major problem for many people. Research is needed to understand it, and physicians need to support people going through it. However, the status of those working in the field is not enhanced when they assert obvious errors. “For instance, multiple sclerosis was considered a psychological condition until the MRI was invented” Wrong. MS was well known and described as a clear disease long before that. That makes readers wonder about any other errors in the argument.

  • Angela Warner says:

    I have an unspecified systemic illness. I have numerous signs and symptoms, ranging from neurological and endocrinological to myofascial and musculoskeletal. I also have significantly abnormal imaging and blood tests. I fought to see an internal medicine specialist at UBC (I did not get Arseneau, unfortunately). Because I had a diagnosis of FND/Conversion Disorder on my file, I was told to go away because “you are being well-served by a psychiatrist”. (In fact, the psychiatrist had told me to see a psychologist, who told me my problem wasn’t psychological and that I needed to see a neurologist). This is not an uncommon scenario for FND patients, who are only too familiar with medical gas lighting, as well as appalling and abusive treatment in the ER, where it is assumed you’re “faking it”. This article is a ray of hope that we may be moving towards a more enlightened era of medicine.

  • Rob Murray says:

    “Pandemics disable people — the history lesson that policymakers ignore” -Spinney L, 2022

    Thank you for the article. The golden era of discovery in medicine is over. Physicians are no longer looking for root causes of diseases. Medicine is being driven by shareholder preferences and shareholders are not interested in cures, new antibiotics or vaccines. The paradigm of modern medicine is to palliate, the profits come from treatments that give the pharmaceutical industry life-time annuities. Big Pharma sells few cures, but lots of bandages—very expensive bandages that require lifelong refills. No pharmaceutical company is interested in finding the cause of autoimmune disease and eradicating it. That wouldn’t be profitable. Historically the cause of inflammation was usually found to be due to infection. Presently there are few if any medical sleuths with microbiological training doing careful tissue research and looking for root causes of inflammation which was usually found to be due to infection.

    It is now felt that many microbes live on in the body in tissue reservoirs. This has been shown in Ebola where bacteria and viruses can be reactivated by subsequent infections. The immune system can detect them but can’t clear them because they are inside biofilm or cells of the CNS such as the vagus nerve. Several infections seem to have similar pathways such as MS, Lyme, CFS and fibromyalgia etc. The blood with its circulating antibodies would be a very poor place to hide and the default position of physicians when they don’t find something in the blood is to ascribe a psychiatric or idiopathic cause. Once a disease is labeled as somatoform or idiopathic all investigation for root causes ends.

    Physicians are taught in med school that we get 90% of the information we need to make medical decisions by simply listening to the patient. But the culture of medicine has shifted—Somehow the value of patient-provided history and insight has been eroded, leaving the unlucky sick adrift and rudderless, just because they have an illness whose symptoms can’t be proven.

    We would hope our evolving understanding of Long COVID might spawn a broader investigation of diseases such as long-Lyme. In the case of ME/CFS they don’t know what they are looking for and they are looking in the wrong places –namely our blood.

    If someone has an illness, takes a drug to treat it, and afterward retains exactly the same symptoms, why wouldn’t you assume that they have simply continued to have the same disease? Why invent a mysterious “post-disease syndrome” to explain what is experienced by the patient as one continuous sickness? Specialists live in silos and this should remind one of the parable of the 5 blind men examining an elephant. Infectious disease doctors are very uncomfortable with the idea that microbes can cause neurological disease such as Alzheimer’s. Borrelia responsible for Lyme are long-lived, immune evasive, immune modulating stealth pathogens that can produce antibiotic tolerant persister cells. Medicine has known for over 40 years that Borrelia can cause Alzheimer’s thanks to the work of Pathologist, Dr. Alan B. MacDonald and confirmed by Miklossy in 2011, but has chosen to ignore this. Psychiatrist Robert C. Bransfield tells his patient “of course you are sick, your brain is infected”.

    Immunosuppressants are very profitable which has spawned an epidemic of immune diseases. This industry pays for hospitals, medical research and political parties so the situation is unlikely to improve. Private foundations are making headway but it really requires large amounts government funding.

    Medicine is authoritarian where it’s eminence over evidence. Medical doctors are dependent on scientists and researchers until it becomes inconvenient as in the case of complex disseminate [chronic] Lyme disease. This goes right to the top of the PHAC in Canada. The conditions that caused the 2017 Conference to Develop a Federal Framework on Lyme Disease such as better tests, a made-in Canada set of Lyme disease guidelines and treatments for complex disseminated Lyme still exist. Infectious disease doctors have abandoned their colleagues in family medicine who have to live with their patients. It’s the attitudes they teach that are so hard to change.

    The $4m arising from the conference was given to a single group [CLyDRN] without competition composed of public health officials and employees along with status quo researchers and past executive members of the private Association of Medical Microbiology and Infectious Disease [AMMI] Canada who have a death grip on Lyme disease management in Canada. CLyDRN suffers from bias and group think. One would normally look for diversity of opinions when trying to solve a problem. In this case PHAC has prioritized the preservation of the antibiotic supply over returning Canadians to health. It’s difficult to solve a problem that medicine won’t admit to. In the case of Lyme, it’s the long term disability insurance industry that doesn’t want to underwrite the costs of treatment for chronic conditions.

    The Public Health Agency of Canada [PHAC] was tasked with development of determining the costs associated with chronic disseminated Lyme in Canada and developing a made in Canada set of Lyme disease guidelines. Instead they have chosen to drop their role of control of disease stating that health is a provincial matter. Instead PHAC will be in charge of education and prevention. How is it that Canadians were able to develop a vaccine for Ebola half a world away but can’t develop tests, guidelines and treatments for Lyme in Canada. Is this diminished role we want PHAC to play? It’s a travesty that Canadians continue to have to travel abroad to seek treatment.

    Sincerely,
    Dr. Rob Murray [DDS retired]
    Lunenburg, NS

    References:
    CHRONIC, the Hidden Cause of the Autoimmune Pandemic and How to get Healthy Again, Steven Phillips, MD and Dana Parish, Houghton Mifflin Harcourt, 2020

    Crypto-infections: Denial, censorship and repression – the truth about what lies behind chronic disease, Christian Perronne, 2021 Hammersmith Health Books

    Amy D. Proal, PhD, [Microbiologist breaking through silo walls] PolyBio Research Foundation, YouTube Channel and papers.

  • Ted Ball says:

    “Gaslighting” of patients suffering from environmentally-linked illnesses like Long-COVID; Multiple Chemical Sensitivity, Chronic Fatigue Syndrome, ME / FM has been a practice by the Ontario Ministry of Health for more than 30 years. Numerous Reports have been prepared calling for “CARE NOW” for these one million patients, however “Conventional Medical Paradigms” cannot comprehend the complexities of these illnesses impacting on multiple organ systems with over 200 symptoms.When Convention Medicine does not understand, the answer is : the patient is nuts! PS- Healthy Debates is also guilty of “gaslighting” these patients.

Authors

Anthony Fong

Contributor

Anthony Fong is an emergency physician in Vancouver and clinical assistant professor at the University of British Columbia Faculty of Medicine. He has recently completed a fellowship in global journalism at the University of Toronto’s Dalla Lana School of Public Health.

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